UK Research Collaborative Conference in Newcastle: 13th - 14th October

[Keith Geraghty]

M. Edwards "This is why I think it is important to take a broad view of potential triggering and maintaining factors, and to consider all possibilities in an open and honest way. This includes thinking about psychological and lifestyle issues, and if these appear to be important, these should be included in thinking about how to treat the problem."

£600-000 from MRC

He runs specialist outpatient services for movement disorders and has a particular interest in the diagnosis and treatment of dystonia, including focal hand dystonia affecting musicians. He also has a special interest in functional movement disorders and other functional neurological disorders and has a specific clinical service for such patients.

 

[Sidereal]

This year's CMRC conference is even more depressing than last year's.

 

[Scarecrow]

I'm afrid it was a bit depressing in terms of how he seems to explain functional disorders

I'm so disappointed

It can be difficult to interpret slides in the absence of dialogue.

What do you make of this slide in the same presentation?

Some problems with the "reattribution" model
•Adverse life events are by no means universal.
•Adverse life events often happen many years prior to onset of symptoms.
•Does not explain symptom "selection".
•Irrefutable hypothesis without a neurobiological mechanism.

 

[Scarecrow]

By the way, Mark Edwards is one of the new CMRC board members announced in July.

He began his presentation today by observing that the term Medically Unexplained Symptoms should be banned from medical textbooks. (Unfortunate that the previous presenter frequently used the term.) He followed that up by saying that he thinks about the mechanisms that could be going on in the brain that could explain the symptoms.

I strongly get the impression that for him functional does mean literally functional and that it isn't automatic double speak for hysteria. Whether this study yields anything or not, you can't argue that he isn't looking at biological mechanisms.

 

[SOC]

This set of slides appears in the comment section. http://www.acpin.net/archive/Resources/ME - Functional Neurological Disorders.pdf

OK, to all members of this forum... DON'T DON'T DON'T look at this document.. Just don't. I can't quite believe what I've just seen.

Anybody have any eye soap? Brain soap would help, too. I want all that filth washed out of my memory (and I didn't even look at all the slides before I gave up in disgust).

Hysteria. Sheesh. No thanks from me for spending 600,000 on this, MRC. That much money could have been SO much better spent.

So much for being optimistic about apparently biomedical research being funded in the UK. The day started so well and with so much positive energy....

 

[Bob]

So, Dr Mark Edwards is investigating functional neurological symptoms (FND), but I can't understand how or where CFS fits into that field of research. This is what he has to stay about FND:
http://www.fndhope.org/functional-n...r-mark-edwards-responds-to-patient-questions/

 

[Snowdrop]

Anybody have any eye soap? Brain soap would help, too. I want all that filth washed out of my memory (and I didn't even look at all the slides before I gave up in disgust).

Hysteria. Sheesh. No thanks from me for spending 600,000 on this, MRC. That much money could have been SO much better spent.

So much for being optimistic about apparently biomedical research being funded in the UK. The day started so well and with so much positive energy....

All the commenting does arouse curiosity but your comment pretty much assures I'll take a pass.
We forget all kinds of things any given day but whatever this is I have a feeling it's one of those sticky stinky things that linger.

 

[Keith Geraghty]

Medically unexplained symptoms is a term that says what it means - something unexplained, it wont be banned anytime soon, doctors in Emergency departments see patients in comas for which no explanation can be found, what else can the doctors conclude other than a medically unexplined event - there will always be medically unexplained symptoms, GP practices are full of them, doctors do their best to diagnose, but for the most part its an educated guess think of the common cold for example, theres no proof a patients has a virus, symptoms may fit with a cold, but its left open -- in ME there are clear biological abnormalities and immune abnormalities that separate ME from the category of medically unexplained, the cause might be unexplained but the symptoms have much support in science.

doctors and psychiatry are moving fast to the term funcitonal somatic disorder - I think White and co have a grant to conduct a review of the usefulness of therapy for functional somtic disorders in general practice. My concern about the MRC study by Dr Edwards is that it may go down the route of trying to find a biological brain explanation for a hypothesis that is a bit limited, ie that theres a a viral trigger that causes a response in the brain that induces sickness feelings, - if this is the hypothesis, there are many problems with it, for instance he mentioned Hep infection, you can not easily compare Hepatitis to ME, ofcourse there are some similarities and immune respones in common but ME is a multsystem illness, I think most Hep C sufferers are able to live normal lives if their infection is not at a severe level - you can not say the same of ME.

 

[Cheshire]

I think that what qualifies best his whole speech is ambiguity. (sorry too tired to make a new post)

http://forums.phoenixrising.me/inde...ard-incl-peter-white.37888/page-2#post-619725

 

[Bob]

This year's CMRC conference is even more depressing than last year's.

Overall, I thought today's conference was OK, but I'm left feeling depressed and angry that £600k has been awarded to study a bloody functional illness. All the fuss about the UKCMRC seeking to promote biomedical research into ME, and we get that! I know I was warned.

 

[Bob]

Anybody have any eye soap? Brain soap would help, too.

I told you not to look!

 

[BurnA]

The potential irony is that today I was at the inaugural meeting of EMERG (European ME Research Group), which was just such a workshop, except at a pan-European level. Moreover the UK side is spearheaded by the Biobank group set up with the help of AfME - and their representative was in London, not Newcastle!! IiME still seem to be a little ahead in this game. But I very much hope that in the longer term everyone will be pulling in the same direction.

I wouldn't call this potential irony ...how can someone talk about setting up a pan UK network when others have actually established a pan euopean network ?
I dont know what to call it but it would be a lot worse than potential irony.
And as you say their rep was actually in london. Embarrassing maybe ?

 

[Cheshire]

Here is a text where Edwards explains the "mechanism" of functional neurologic disorders.

http://www.acnr.co.uk/2013/06/mechanism-of-functional-neurological-symptoms/

Clearly worrying if he thinks ME can be explained in the same way

Clinical signs in patients with functional neurological symptoms show clearly the importance of self-directed attention in generation of symptoms: when distracted, patients are typically much less symptomatic. Conversely it is very easy to generate new symptoms and worsen existing ones during clinical examination,most likely via enhancing self-directed attention.This phenomenon has been studied experimentally, with evidence that duration of direct visual attention towards the body during movement (e.g.looking directly at the limb which is moving) is significantly higher in patients with functional motor symptoms than neurological disease controls.3 In patients with functional motor symptoms, movement is abnormal when explicitly cued as is motor learning in an explicit context.4,5 However,movement is normal when cued implicitly as is implicit motor learning (e.g. learning a visuo-motor transformation).5 These data fit also with the results of some of a very mixed field (in terms of patients studied and paradigms used) of functional imaging studies in functional neurological symptoms. A number of such studies (see 6 for a review) show differences in activation of prefrontal regions during attempted movement which are similar regions to those engaged when healthy people pay attention to the production of overlearned movement patterns7 (a process which in healthy people impairs movement production). The basic point here is that attention towards the mechanics of movement production and otherwise monitoring internal bodily sensations is an abnormal state, and may directly interfere with normal movement production and sensory perception. Beliefs, expectations and internal models of the world.

In one study relevant to this,patients with functional and organic tremor were asked to wear a ‘tremor watch’ which recorded tremor constantly.9 They were in parallel asked to fill in a diary reporting how much of the day they felt they were affected by tremor. Both groups of patients over-estimated the amount of the day they experienced tremor (i.e.perception was more in line with expectations than sensory data),but those with functional tremor did this to a significantly greater extent than patients with organic tremor: on average they had only 30 minutes of tremor a day while reporting tremor 80-90% of the time. As the nature of the study was made explicitly clear to participants,malingering seems an unlikely explanation. An alternative explanation is that whenever attention was turned towards the limb in patients with functional tremor, tremor was generated, and that expectations/predictions relating to the presence of constant tremor was so strong that it overwhelmed any sensory feedback that should have indicated absence of tremor during periods when attention was diverted. In a more abstract study of belief formation under conditions of uncertainty, patients with PMD demonstrated a ‘jumping to conclusions’ style of decision making.10 This decision making pattern, making a decision on the basis of limited evidence, has previously been reported in patients with delusions, and makes a potentially interesting link between functional symptoms and perceptual distortions that occur in neuropsychiatric illness.

A number of proposed models13-15 highlight the aetiological importance of the natural flexibility that exists in the brain regarding the way that sensory information about the state of the body and expectations/predictions about these data are integrated to produce our perceptual experience and action.The crucial first step in the production of functional symptoms is therefore proposed to be the instigation of an abnormal belief/expectancy relating to the symptom(s).This suggestion is at the heart of a number of proposed models for the generation of functional symptoms.13-15 It is of note that the instigation of this belief/expectation could arise from a number of different factors (which could be different in different people) including emotionally traumatic events, but also physical triggering events (injury, organic illness) that are commonly reported around onset and panic responses associated with such events (also commonly reported) which could serve to increase the salience of the novel sensory data coming from the physical event.

 

[SOC]

I dont know what to call it but it would be a lot worse than potential irony.

Jingoism? Attempt to maintain control of the ME message in the UK? (psst... It's all in their heads, ignore the research going on in the rest of the world -- they're just a bunch of crackpots and quacks)

 

[Sidereal]

Here is a text where Edwards explains the "mechanism" of functional neurologic disorders.

http://www.acnr.co.uk/2013/06/mechanism-of-functional-neurological-symptoms/

Clearly worrying if he thinks ME can be explained in the same way

I just read this very article an hour ago and thought it was the stuff of nightmares. Tagging @Woolie because I know she "enjoys" stuff like this.

 

[Jonathan Edwards]

So, Dr Mark Edwards is investigating functional neurological symptoms (FND), but I can't understand how or where CFS fits into that field of research.

That ends up being my conclusion. He may have an interesting non-psychological explanation for dystonias but that would seem to have little to do with ME.

 

[SOC]

Here is a text where Edwards explains the "mechanism" of functional neurologic disorders.

http://www.acnr.co.uk/2013/06/mechanism-of-functional-neurological-symptoms/

Clearly worrying if he thinks ME can be explained in the same way

I just can't Like that post, but thanks for the information. What a trainwreck that this guy was funded to study ME. Not only will the wasted money not move knowledge forward, it will likely set things back even further as we have to point out the failings in this research as well.

Anybody know how he is collecting his ME patient cohort? I don't imagine there's any hope he's doing a good job of finding ME patients with genuine PEM as opposed to psych patients or generally fatigued people. I want to see research cohorts chosen by doctors or researchers who actually know what PEM is. Who on the ICC panel is in the UK?

 

[Sidereal]

This set of slides appears in the comment section. http://www.acpin.net/archive/Resources/ME - Functional Neurological Disorders.pdf

Looks like a mix of amateur/armchair psychiatry and two-bit philosophising about free will.

 

[Scarecrow]

Clearly worrying if he thinks ME can be explained in the same way

If he thought that, I doubt that he would be bothering with blood samples and MRIs.

Unless he wants a null result to bolster his hidden agenda.

I can't say I'm terribly excited about this study. At best it will provide some evidence for the sickness behaviour hypothesis but anyone who thinks sickness behaviour entirely explains ME must have a screw loose.

 

[Jonathan Edwards]

Anybody know how he is collecting his ME patient cohort? I don't imagine there's any hope he's doing a good job of finding ME patients with genuine PEM as opposed to psych patients or generally fatigued people. I want to see research cohorts chosen by doctors or researchers who actually know what PEM is. Who on the ICC panel is in the UK?

My impression is that he is not studying ME patients but people with functional neurological disorders - presumably of the sort he specialises in. I am familiar with this sort of problem but I would not associate it with ME.

Looks like a mix of amateur/armchair psychiatry and two-bit philosophising about free will.

I am not sure about two bit philosophising but I am a bit concerned about how the model would actually work in the context of the background he cites from people like Libet and Haggard. Models involving 'predictive coding' are very fashionable and almost certainly valid but he seems to be suggesting prediction or 'belief' of a rather different sort and I cannot quite see how it would fit in.

It would be helpful to know exactly what sort of imaging was going to be involved. As it is it is pretty hard to assess what is being proposed.